Sunday, April 29, 2012

Since my last few blog entries have been rather somber in nature, I thought I’d try to hit a lighter note and share some of the positive and amusing things Alex has done or said while he’s been in the hospital. Even though being in the Behavioral Medicine Unit should be a culture shock for Alex since he has led a rather sheltered life by spending his time almost exclusively with Ed and me, he’s adapted to being with other people amazingly well. In fact, the other day when we asked him about various staff members we sensed he especially liked, he told us that he likes “everyone at the hospital.”

He has formed bonds with some of the nurses who have taken especially good care of him. LeeAnne told me the other day that when he saw her arrive to start her shift, he came running toward her to greet her. However, he knew that he couldn’t come into the nurse’s station, so he stopped on a dime (As she told us, he stopped as though there were an invisible line he knew not to cross.) when he reached the entrance and just smiled at her until she came to say hello to him. Later in the week, Laura called to ask if Alex could drink Silk soy milk. Apparently, he had seen her drinking it and decided he’d like her to share it with him, as she had given him the organic bananas she had brought for her lunch another time. I think he wasn’t as interested in drinking the Silk as he was in just sharing a treat with her. She also said that he came over to her at one point and gently pulled her hair in a teasing, affectionate way, probably to get her attention. When she asked him if he’d tugged on her hair, he grinned and told her yes. Another nurse, Jennifer, who seems to find Alex amusing, told us that he has figured out the security code to open the supply closets on the unit, which she thought was pretty clever. The other day, apparently he decided to use the code to open the linen closet, and the staff couldn’t figure out who had opened the door until they saw Alex grinning, feeling smug that he had done it himself. She also thought it was funny that he likes to play Yahtzee with her as long as he’s winning, but if she’s winning, he doesn’t want to play any more. We’re thankful for the wonderful care these nurses are giving him as well as the kindness and understanding they show.

When we go to visit Alex every day, we try to think of topics of conversation that will interest him yet not upset him. Most of the discussion involves our asking him questions that he can give a yes or no answer. Sometimes, we try to expand his responses by asking him open-ended questions instead. The other evening, we asked him who the funniest person he knows is, expecting him to give his standard answer of “Bud”—the name he calls my uncle, whom he finds really amusing. After mulling this question, he surprised us by naming Ed’s sister’s husband, Alex’s uncle Jack, as the funniest person he knows. Apparently, he remembers Uncle Jack as pretty amusing because he laughed just thinking about him. When we asked him about another funny guy, a clown named Corky whom we saw at the county fair several years ago, this also made Alex laugh. The next day we asked Alex about a funny person he saw at the fair, anticipating he would tell us “Corky the Clown.” When we asked him, “What was the name of the funny guy you saw at the fair?” without missing a beat, he told us Grandpa. Since he had seen Grandpa at the fair, and Grandpa is a funny guy, this was a good answer that made all of us laugh.
Although Alex’s hospitalization has been a stressful time for our family, his surprising ability to adapt and adjust to the changes has been comforting to Ed and me. For someone used to only being at home and to following routines he has developed over the years, Alex seems content to allow new caregivers to help him, and he likes the activities they have planned. At the end of a recent visit, Ed asked him what he was going to do later, whether he was going back to the day room to watch tv or stay in his room and read books. Alex thought for a moment, smiled, and said, “Wait and see.” As we anticipate and question what God holds for our future, we see wisdom and faith in Alex’s comment: “Wait and see.”

“And David said to his son Solomon, ‘Be strong and of good courage, and do it; do not fear nor be dismayed, for the Lord God—my God—will be with you. He will not leave you nor forsake you, until you have finished all the work for the service of the house of the Lord.” I Chronicles 28:20

Sunday, April 22, 2012

In recent blog entries, I have been detailing Alex’s increasing agitation and aggression over the past six months that led to our having him hospitalized in the Behavioral Medicine Unit of St. Anthony Hospital last month. After twelve days in the hospital and several medication changes, Alex was released and came home for ten days. While he was still not quite his old self, he seemed calmer, and we thought the medication changes were working. However, after about a week, we saw his anxiety emerging again, as he began throwing things and then had major meltdown in which he physically attacked Ed. Thinking he needed another medication adjustment, we gave him a therapeutic dose of Valium, gave him some time to calm down, and headed back to St. Anthony, where he was admitted for four more days.

During the second hospitalization, they decided to add lithium to regulate his moods and change his SSRI from Prozac to Zoloft. Since he had stabilized and had no agitation while he was there, he was once again released to come home. In addition, the insurance company, as they had during the first hospitalization, was pressuring the hospital to release Alex. He came home on a Friday afternoon, and we had high hopes that they had finally found the right combination and dosages of medications to keep his emotions under control. He seemed fine again that weekend, and we had an appointment on that Monday afternoon to see the nurse practitioner who has been overseeing his medications during his hospitalization stays.

Not wanting to create any anxiety, we didn’t even tell Alex that he had an appointment; we were just going to tell him that we were going for a ride, an activity he always enjoys. Less than ten minutes before we were planning to leave, Ed and I were sitting in our family room when we heard a thud from the den where Alex was watching television. We both jumped up to see what was going on and found that Alex was highly agitated; he had hurled his drink bottle at the wall, hence the noise we’d heard from the other room. Ed calmly tried to reassure Alex, but he continued throwing any objects he could find—books, handheld electronic games, etc.

Then he lunged at Ed, ready to attack. To prevent anything else from being thrown at us and defend himself, Ed needed to restrain Alex by holding his arms. With adrenaline fueling his strength, Alex fought Ed violently, hitting and kicking him with all his might, even biting him at one point because Ed was holding his arms and legs to stop the hitting and kicking. All the while, he was yelling apparently obsessive fears about not remembering pi digits and foaming at the mouth. Fearing for our safety, I called the police for help in restraining Alex.

When the police officer arrived, Alex had pretty much calmed down, but Ed was bruised from head to toe from Alex’s attack. The policeman was very sympathetic and asked us several questions, clearly trying to understand autism and Alex’s behavior. He stayed as we gave Alex a dose of Valium and waited to make sure he was completely calm. Once the sedative took effect, we once again headed for Michigan City and the hospital, my parents following in their car to give support.

The emergency room where Alex had been assessed just the week before was very busy, and we had to wait over five hours before he was taken to Behavioral Medicine. Fortunately, he remained calm during that time, even sleeping at one point. The ER doctor rather bluntly told us that we couldn’t keep bringing Alex “every time he gets angry,” clearly not understanding the seriousness of the situation. Nonetheless, Alex was admitted to the Behavioral Medicine Unit for the third time in a month. Once he was on the floor, Lee Anne, the nurse who had taken such good care of Alex the previous two visits, suggested that we needed to think about placing Alex somewhere he can get the care he needs instead of planning to take him home. She remarked that while medications can help him most of the time, he will still have times when he gets upset and aggressive, which has become increasingly difficult for Ed and me to handle. Exhausted and emotionally drained, Ed and I agreed that we needed to consider alternatives because the current situation obviously was not working.

The next day, Alex’s caseworker from the hospital called me to inform me of the paperwork we would need to fill out from the state to start the process of obtaining extra services for Alex so that we can get the additional support we clearly need. Working together, she and I put together the application packet for the Bureau of Developmental Disabilities. [I’ll detail this information in a future blog entry.] We also scheduled a time for Ed and I to meet with her and the nurse practitioner to discuss what needed to be done for Alex to help him. Another medication change in the form of doubling his Zoloft dosage was also made in hopes of addressing his OCD issues that seemed to fuel his anxiety.

While Alex had been cooperative and calm for the staff, the night before our meeting, he suddenly and for no apparent reason became upset during our visit with him, hitting Ed and throwing books at us. A wonderfully sympathetic psych. tech. calmed Alex and explained to us that people with autism and dementia often lash out at their caregivers in frustration because they can’t verbally express themselves. She also shared that her aunt had similar issues with an adult child with autism, and that placement in a group home had been the solution. Her cousin flourished in the group home surrounded by peers. After a month of struggles to find solutions to help Alex, Ed and I finally reached an emotionally heart-wrenching decision as parents: Alex could not come home. He would need placement in a facility where he can receive the support he needs and where we can all be safe.

Clearly, we would like to bring him home and hope for the best, but his increasingly violent behavior makes this an impossibility right now. In our meeting, we expressed our concerns and fears about Alex, which both his caseworker and the nurse practitioner, who had worked in group homes with adults with autism, understood. Apparently, aggressive behavior is fairly common in adults with autism who are in their early twenties, probably a hormonal issue. She fully supported our decision to place Alex in a facility and feels that he will improve with the structure and the exposure to peers, based upon her experience. Now we are working at getting him placed in a residential facility for adults with developmental disabilities or a group home and praying we can find something soon and not too far from home. While we hate that Alex can’t come home, we know this is what is best and hope that we can make this transition soon so that we can all start adjusting to the major changes in our lives. Please keep us in your prayers as we find a new place for Alex where he can receive the help he needs and as Ed and I adjust to missing Alex, who has been the center of our lives for twenty years.

Sunday, April 15, 2012

As I have explained in previous blog entries, last month Alex was admitted as an inpatient to the Behavioral Medicine Unit of St. Anthony's Hospital in Michigan City. While he has been dealing with severe anxiety off and on for about six months, he had several recent episodes where he became extremely agitated and aggressive. Although the decision to hospitalize him was difficult, Ed and I were very pleased with the care he received at St. Anthony's. [The room where Alex stayed can be seen in the photograph on the left; his room was on the third floor and looked between the flagpoles.]

The first week of his hospitalization, the staff worked at trying to get him weaned off the three medications he had been taking--Prozac (an SSRI used to help his OCD and anxiety), Ativan (a sedative used to calm his outbursts), and Abilify (an anti-psychotic used to help Prozac work better and to ease his anxiety). Instead, they put him on Depakote (an anti-seizure medication also used to regulate moods), Valium (a sedative to calm his outbursts), and Invega (an atypical anti-psychotic to ease his anxiety). Before trying Invega, they gave him Risperdal, a medication commonly used in autism to treat aggression. However, he showed neurological side effects, so they took him off it immediately and gave him a medication to counteract the negative effects. Between withdrawal from the old medications and trying to get the dosage and combination correct for the new medications, the first week was a roller coaster ride. At times, he was very sweet and calm, and at other times, he reverted to throwing things and hitting when he became upset. Thankfully, the staff handled him quite well and understood that he couldn't help his behavior.

One day a staff person who didn't realize that Alex couldn’t eat foods with glutens or milk allowed him to eat cheesecake. After that, Alex had a terrible meltdown and another one the next afternoon. I don't know whether the cause was the cheesecake or simply coincidence, but he won't be eating cheesecake again anytime soon. Later that day, his behavior became so aggressive that they had to put him in four-point restraints (both arms and both legs) until the injection of Geodon, a sedative, kicked into his system, making him calm again.

When Ed and I went to see him the evening after he had been in restraints, we didn't know what to expect, but he was calm and pleasant, which was reassuring. Also, someone had helped him wash, shave, and put on clean clothes before we arrived. He looked pretty good for someone who'd had such a rough time earlier in the day.

During the first week, Alex had a pattern of having meltdowns shortly after lunch. The staff learned to be on guard around 1:00 because he seemed to get agitated at that time for some reason. During the week, visiting hours were scheduled in the early evening, but on weekends, visiting hours were at 1:00-3:00 in the afternoons. Knowing his history of post-lunch meltdowns the first week, Ed and I were leery about going to see him during the bewitching hour, but we hoped for the best. After having had a good morning (as we were told by the staff), he once again became agitated and aggressive shortly after we arrived at 1:00 on Saturday. He threw a cup of water, began hitting Ed and then a psychiatric tech who came to help, pulled a nurse’s hair, and began yelling nonsensical complaints, which the nurse explained was evidence that his mind was racing.

They placed him in an isolation room so that he could calm down. While it's not a padded cell, it's a small room with nothing other than gym mats on the floor and a window in the door for observation. Even though Alex was really upset, he obediently sat on the floor mat and managed to calm down enough for them to give him an injection of sedative. After the sedative kicked in, we were able to spend a few minutes with him but decided not to risk his wrath by overstaying our welcome.

That evening I talked with one of his nurses, who told me that he had a good afternoon and had remained calm, which was reassuring. They had decided that Ed and I should forgo our daily visit on Sunday to give Alex a day to adjust to his new medication schedule. She told me that they have to do this with elderly dementia patients, as well, because seeing family reminds them that they want to go home, and that makes them agitated. We trusted their judgment and their ability to care for Alex, so we did not go to see him on that Sunday, a week after he’d been admitted to the Behavioral Medicine Unit.

Thankfully, his nurses were terrific about providing reports about Alex over the phone so that we knew what kind of day he'd been having. One of them called that Sunday morning to make certain that Alex wasn't supposed to have any kind of milk. She discovered that lactose-free milk was on his breakfast tray this morning, and she took it away before he drank it, knowing his food sensitivity to milk. I explained that the problem isn't lactose intolerance for him, but a reaction to caseins, the proteins in milk. He doesn't digest them properly, and this can cause digestive and behavioral issues. In looking over his chart, she noticed that he'd had lactose-free milk for breakfast and lunch the two days he'd had terrible meltdowns. While that could have been coincidence, she and I agreed that he shouldn't be drinking any kind of milk, and she marked on his chart that he could not have ANY milk products to avoid any future dietary confusion.

When I called later that afternoon to see how he was doing, his nurse told me that he'd had a good day without meltdowns. The only bad thing he did was to throw a cup of water, so she made him sit in the "quiet room," the isolation room with gym mats on the floor. She said he was fully cooperative and walked there without having to be led. He sat there for a few minutes calmly and then was able to go back to his room without incident. This showed a huge improvement from the previous few days.

That evening, I spoke with another nurse, who told me that Alex had continued to be cooperative. She said that they had a new patient who was quite loud, and Alex had the good sense to leave the noisy day room voluntarily on his own, going back to his room and calmly reading a book instead. Again, this showed progress because he'd removed himself from situations that could escalate his anxiety.

Basically, the first week of hospitalization for Alex was one in which he alternated between his pleasant “Dr. Jekyll” personality and his aggressive, anxious “Mr. Hyde” counterpart. Fortunately, the medication changes made appearances of Mr. Hyde less frequent, and the improvements as time went on that first week gave us hope that he was adjusting well to the new medications. In my next blog entry, I’ll detail events of his second week of hospitalization.

“I am certain that God, who began the good work within you, will continue His work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6

Sunday, April 8, 2012

In my last blog entry, I explained how an especially aggressive outburst had led us to bring Alex to St. Anthony Hospital’s emergency room for a psychological assessment. Although we were able to calm him with a shot of Ativan before we left home so that we could travel to Michigan City without incident, he had another even more aggressive meltdown while in the emergency room that required another shot of Ativan along with a shot of the sedative Haldol. With both medications in his system, Alex was drowsy and no longer agitated, ready to be moved to the Behavioral Medicine Department, where he would be admitted.

When LeeAnne, the nurse from Behavioral Medicine, came with a wheelchair to get Alex, she told us that she couldn’t take him up to her department until someone from hospital security came to accompany us. She explained that this was hospital policy for everyone’s protection, and knowing that we would have a security officer with us in the hallways and elevator was comforting to me, rather than upsetting, because we would have someone to help if he became agitated again. With the arrival of a Michigan City police officer, we began the trek up to the third floor, where Alex would spend the next several days.

For safety reasons, the Behavioral Medicine Department is a locked ward with limited access to visitors. Once we arrived there, LeeAnne unlocked the door and then locked us inside. As someone who is claustrophobic, I had to fight my own anxiety about being locked in someplace and focus on getting Alex settled. She took us back to a kitchen area, where she weighed Alex and asked us dozens of questions needed to fill out required paperwork. From all the sedatives he had been given, Alex was drowsy and kept laying his head on the table, but contently grinning. LeeAnne explained that while the ER had to use strong medicine to sedate him, the goal of the Behavioral Medicine Department was to use medications that would make him calm yet alert, which was comforting.

One of the concerns that the nurse in the ER had raised came up again as we went over paperwork for his admission to Behavioral Medicine; we did not have legal guardianship of Alex, who is twenty years old, nor did we have a medical power of attorney document for him. Since he is legally an adult, he has the right to make decisions for himself, but his earlier behavior clearly indicated that he’s not capable of making important decisions on his own. Moreover, to protect people from being committed to a mental health facility against their will, rules are even more stringent than with other medical procedures. However, the emergency room doctor agreed to sign a document granting a 72-hour emergency psychiatric hold, which allowed them to admit Alex into Behavioral Medicine for initial treatment. We knew that he would likely need to stay more than three days, and we knew that we would have to have the legal papers drawn up quickly to assure that he received the treatment he desperately needed.

As LeeAnne asked us various questions about Alex’s autism and his habits, I began to realize that he was going to have some adjustment issues since he’s always lived at home with Ed and me, who had always attended to his various needs and idiosyncrasies. For instance, Alex hates getting water in his eyes; therefore, he always takes baths instead of showers. However, they only had showers, so this was going to be a major change for him. LeeAnne assured us that someone would help Alex with showering. Also, Alex’s restrictive gluten-free and casein-free diet could pose another problem, but she told us that they would alert the dietician and find foods that Alex could eat on his diet. (My fears of his allergen-free diet being compromised while he was in the hospital later came to pass as he was unknowingly given foods with glutens and milk; I’ll detail that in a later entry.) Another concern we had was what Alex would do all day since he wouldn’t have his books, handheld games, and computer, nor would he be allowed to watch television as he pleased. LeeAnne assured us, as she did with every concern we raised, that he would be kept busy with various activities and that they would take good care of him.

Although I had packed a bag with a change of clothes, LeeAnne told me that he only needed a change of underwear and his toothbrush and toothpaste; they had things for him to wear. She took him to change his clothes while Ed and I talked with the psychiatrist, a kind man who reinforced our belief that we had brought Alex to a place where he could get the help he needed. At one point, I looked out the window in the door to the hallway and saw a tall, handsome young man dressed in surgical scrubs. I wondered if he was a doctor when I first saw him, and then I realized it was Alex dressed in scrubs, looking rather professional, especially considering the terrible night he had endured.

After we had given all of the necessary information and had been given information about visiting hours and the numbers we could call to get updates on Alex, we knew the time had come to leave Alex there. I remembered how I felt the first time I dropped Alex off at special education preschool, and this felt exactly the same way: I was entrusting my baby to other people and praying that they would take precious good care of him. Both times, Alex didn’t seem fazed to be left, but I was teary-eyed while trying to be strong in saying goodbye to him, knowing this time that we wouldn’t see him until the next day. LeeAnne again reassured us that they would take good care of him and added that Alex would likely sleep most of the rest of the day from all the sedatives he’d been given. With that, Ed and I left our son, met my parents who had adamantly insisted that they would stay in the waiting room and support us, and began the walk to our cars in the parking lot as Sunday church bells tolled from a church down the block from the hospital.

Once Ed and I got in our car, I began to sob the hardest I’ve probably ever cried in my life. Ed comforted me and commented that I’d been saving that up for a while, and he was right. I’d been as strong as I could through that entire ordeal, and now I was emotionally spent. Beyond fear and sorrow, the tears also came from relief. For years I had feared that we would eventually have to put Alex in the hospital at some point. As upsetting as it was to leave him there, I was relieved that we had found a place where he could get the help he needed, and I knew we were doing what was best for all of us.

In future blog entries, I’ll detail Alex’s hospital stay and recovery in the Behavioral Medicine Department. As we celebrate Easter today and the resurrection of Jesus Christ, I thank God for sending His Son to save us and for His healing power to save our son.

“For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life.” John 3:16

Wednesday, April 4, 2012

As I described in my last blog entry, an especially bad meltdown last month required my calling 911 and having police officers restrain Alex in handcuffs so that he would stop physically attacking Ed and so that I could give him an Ativan injection to sedate him. Once he was calm, Ed and I decided that even though it was the middle of the night, we were going to take him to St. Anthony Memorial Hospital in Michigan City in hopes that their Behavioral Medicine Department could help his extreme anxiety, agitation, and aggression. After printing off maps and directions from Google, I quickly packed a bag for Alex with his toothbrush and toothpaste along with a change of clothes. Since my dad knew how to get there, he led the way with my mom and me in their car, and Ed followed in our car with Alex.

Sleepy from his middle of the night awakening and the Ativan injection, Alex thankfully was calm during the half hour ride to the hospital. All the way, I kept praying that he wouldn’t erupt again en route because I wasn’t certain what we would do if he did. Armed only with Ativan pills, our cell phones, and my dad’s car equipped with OnStar, I guessed that we’d try to give him Ativan and call 911 for help. Fortunately, he seemed to enjoy the ride, and we didn’t need a contingency plan. About three-fourths of the way there, we passed a gas station that had a large brightly lit sign with the gas prices advertised. Since Alex has been fretting over high gas prices, I was extremely nervous that he’d see the sign listing gas prices over four dollars per gallon and get really upset. However, he didn’t seem to notice, which was a blessing. The good thing about leaving at 4 A.M. was that the two state highways we took to get to the hospital were free of traffic, so we the trip went smoothly.

Once we arrived at St. Anthony’s Emergency Department, we were relieved to see that the spacious and attractive waiting room was completely empty. As Alex, Ed, and my parents sat in the waiting area, I gave the emergency room clerk all the necessary information about Alex, his medications, and our insurance. A nurse soon took us back to an examination room, where we explained the two major meltdowns Alex had experienced within the past 24 hours. The nurse weighed him, took his temperature, pulse, pulse oxygen, and blood pressure while Alex remained calm and cooperative. She then took us to another room in the emergency room where Alex would spend the next few hours.

They had Alex change into a hospital gown, and we were able to convince him to lie on the hospital bed to rest. A doctor came in to examine him, and we again explained the day’s events surrounding Alex’s anxiety and aggression. The doctor ordered blood and urine tests, and we weren’t certain how cooperative he would be for those. I asked if they could use a “nun’s cap” specimen container in the toilet so that Alex could sit to give his urine sample, knowing that he’d be able to do that better than to urinate in a cup. Within a few minutes, he was not only able to provide a urine sample, but he nearly filled the large specimen collector. Two registered nurses, strong young men, came to take his blood samples, and Alex was remarkably calm and cooperative, even though they took five test tubes of blood. At that point, they told us we’d have to wait 60-90 minutes for the test results to come back from the lab before any decisions would be made about his treatment.

Since the room was small, Ed suggested that he would stay with Alex and that I should join my parents in the waiting room; the two of them would try to get some rest while we waited. I felt guilty about leaving them, especially since the waiting room had comfortable chairs, a large screen tv, and vending machines with food and drinks, but Ed was right that it was better for just the two of them to stay in the ER room. Concerned about how Alex was doing, several times an hour, I would check on the two of them and was relieved by the calm and quiet that he was fine.

Around 6 A.M., we knew that Alex would need Ativan, or he was likely to have a meltdown. I asked the nurse for an Ativan tablet, and we tried to give it to Alex, who was not cooperative at all. The nurse tried various tricks to get him to swallow the pill, but Alex became more and more upset. Since he wouldn’t swallow the pill, they had to give him an injection, and he fought that mightily, as well. Held down by the two male nurses and Ed, another nurse gave him the injection. Later these young men commented that they couldn’t believe that Ed had been able to restrain Alex by himself because Alex is so strong. Despite the injection, Alex continued to be agitated and aggressive, and he resorted to the only thing he could do with his arms and legs restrained: yelling and spitting. Because he refused to quit spitting, one of the nurses put a disposable face mask on Alex, which angered him even more but prevented him from spitting on them. After a while, they decided he needed more sedative, so one of the nurses used the call button to ask someone at the nurse’s station for a syringe with Haldol. Whoever answered his call told him that he’d have to ask his nurse for that, to which he responded, “I AM the nurse!” Soon another nurse came to give him the injection, and finally the sedatives kicked in, allowing Alex to calm down and rest, and giving the guys a rest from restraining him.

Once Alex was drowsy, I asked Ed if there was anything I could get him, and he asked for some coffee. He probably regrets that request; he later told me that he hoped the coffee I brought him was free because it was the worst coffee he’d ever had. Since it cost 50 cents and came out of the vending machine, I guess he couldn’t expect too much. The longer we had to wait, the more we worried that Alex would once again erupt, so I began hanging around the nurse’s station and asking questions. After finding out that Alex’s lab test results were back, I asked what they were waiting to decide. The shift changes had meant new nurses and doctors, and I had to figure out who knew what was happening.

Fortunately, I spoke with an emergency room clerk who had a take-charge attitude and was willing to make phone calls to find out what was holding up Alex’s admission. She checked with his nurse, the ER doctor, and the psychiatrist on call, and then we started to make progress. However, we encountered a potential setback when his nurse asked if we had a medical power of attorney document for Alex. Assuming that we as his parents could make medical decisions even though he’s legally an adult, just as spouses can make medical decisions for each other, we didn’t realize this was something we needed to have in place. When I told the nurse we didn’t, she explained that the ER doctor would have to have Alex placed under 72-hour emergency hold for psychiatric evaluation, and the ER doctor was willing to approve the emergency admission. However, we would need to get the legal papers drawn up quickly to have him hospitalized for longer than three days. Not long after that, a nurse from the Behavioral Medicine Department came with a wheelchair to transport Alex for admission to her department. When I saw that she wore her identification card on a lanyard bearing the name and logo of my favorite NASCAR driver, Jeff Gordon—similar to the Jeff Gordon lanyard I wear at work with my school ID—I knew God was sending me a sign that we had brought Alex to the right place. While we weren’t happy that we would have to leave Alex at the hospital, I knew I could entrust him to another Jeff Gordon fan, LeeAnne with her maternal compassion that put me at ease.

I’ll share more of our experience with Alex’s hospitalization in the Behavioral Medicine Department in my next blog entry.

“When you pass through the waters, I will be with you; and when you pass through rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.” Isaiah 43:2

Sunday, April 1, 2012

Today marks the beginning of Autism Awareness Month. This week the Centers for Disease Control released new statistics regarding the prevalence of autism, which has nearly doubled in the past five years. The new figures indicate that 1 in 88 children has autism; considering that autism is much more prevalent in boys than girls, this means approximately 1 in 54 boys has autism. Of course, the government agencies that have no real answers as to what causes autism—other than they’re certain vaccines are not responsible—can only point to better diagnosis as a reason for this dramatic increase. Despite these staggering numbers of children diagnosed with a lifelong condition that can significantly impair the quality of life for them and their families, as well as costing thousands of dollars per year—often not covered by insurance—for various therapies to address issues related to autism, much less money is spent on research for autism than other conditions that affect children.

As far as children with autism go, Alex is one of the fortunate ones. Overall, he is quite healthy, unlike many who suffer from chronic infections and painful intestinal problems. He sleeps well, although aided in his younger days by the natural supplement melatonin, in contrast to many children with autism who wander around all night, unable to sleep. Despite a somewhat limited diet because of his sensitivities to glutens and milk products, Alex eats a variety of foods and enjoys them heartily. Many children with autism eat only a limited amount of foods, bothered by smells, tastes, and textures. While some children with autism are nonverbal, Alex can express himself—albeit with some difficulty—verbally, and he has been an avid reader since he taught himself to read as a preschooler. Even though we spent several years potty training Alex, we are thankful that he can toilet independently while others with autism must wear diapers.

Although many families struggle financially to provide the money needed to fund needed therapies, such as speech, occupational, physical, and psychological, we have somehow always found the money on our teachers’ salaries to pay for anything Alex needed. Nutritional supplements needed to supplement dietary needs for children with autism are not covered by insurance and can be quite costly; we have been fortunate that the Lord always provided the money for us for these necessities. In addition, we are blessed to have jobs that allow one or both of us always to be home with Alex; I teach in the morning, and Ed teaches afternoon and evening classes. This ideal schedule permitted us to homeschool him so that he could receive a truly individualized education program that addressed his strengths and weaknesses and met his needs. Perhaps the greatest blessing—as I know we have things easier than other parents of children with autism—has been that Alex’s personality has been easygoing and docile, and he has generally been quite cooperative. Other parents of children with autism often struggle with behavioral issues and work diligently to make their children compliant so that they can function and learn. In the autism lottery, we seemed to hold a winning ticket.

The past six months, Alex has been dealing with increasing anxiety, probably due to hormonal changes. As I have mentioned in previous blog entries, anxiety leads to increased adrenaline in Alex, which leads to aggression. At twenty years of age, he’s six feet tall and extremely strong when he’s agitated, which makes him nearly impossible for Ed and me to handle. After a trip to the emergency room in December to have him sedated after a particularly difficult meltdown, his medications were changed, and we hoped for the best. However, the medication changes at best were not helping, and at worst they seemed to be making him even more anxious. After a visit to a psychiatrist, who suggested that the Abilify Alex was taking could be giving him akathisia, or inner restlessness, we reduced his dosage from 5 mg to 2 mg. That morning, he had another terrible meltdown, so we again took him to our local emergency room, where a nurse candidly informed me, “We suck at psychiatric care. You’ll have to take him somewhere else.” After waiting for nearly two hours for him to be assessed by the local mental health facility, a doctor told me that when she spoke to them on the phone they had already told her that they would not admit Alex to their facility because he has autism. All they could offer was that we could take him to facilities more than an hour away. With that, we went home feeling frustrated and helpless. Fortunately, Alex had calmed down without having to be sedated by injection, and he stayed calm the rest of the day.

That afternoon, I began searching online for facilities that might address his anxiety and need to be constantly monitored during medication changes. I found two in neighboring counties and wrote down their information for future reference. I didn’t realize how soon we would need my notes. That night at 2:00 A.M., Alex awakened agitated and aggressive, attacking Ed forcefully. Fearful that one or both of them could be hurt badly, I called 911 and my parents; the police, paramedics, and my parents all came to our rescue within a matter of minutes. Two strong but kind policemen were able to restrain Alex in handcuffs while he continued to yell nonsensical remarks. The paramedics apologetically explained that they were not able to give him any sedatives. However, the policemen were willing to hold Alex still while I gave him a shot of Ativan I had on hand for emergencies. Moreover, they stayed with us until the medication kicked in and Alex was calm, allowing them to remove the handcuffs. The compassion of these professionals, who told us to call them again if we needed them, helped tremendously in a horrible situation.

Once Alex was calm, I called the 24/7 phone number for the Behavioral Medicine Department of St. Anthony Memorial Hospital in Michigan City, about a half hour drive from our home, to see if they would take Alex. The woman on the phone assured me that they did treat adults with autism and told us to bring him to their emergency room, where he would be assessed before he could be admitted to Behavioral Medicine. Since Alex was drowsy from his middle of the night awakening and the Ativan shot, I suggested to Ed that we take him to St. Anthony’s while he was still calm so that we could get him the help he clearly needed before we had another major meltdown. Ed agreed, and with a quick gathering of everything we needed to take with us, Ed and Alex set out in our car with my parents and I leading the way in their car with Google directions in hand at 4 A.M. on our way to St. Anthony’s. This was just the beginning of a nearly two-week hospitalization for Alex, which was the hardest yet best decision we had ever made as parents. Fortunately, God had provided us with an outstanding facility and staff who could give Alex the care and compassion he needed, as I will detail in upcoming blog entries.

And so for us, as with most parents of children with autism, the day-to-day life of raising a child with autism is much more than one month of media coverage, wearing brightly colored puzzle-piece ribbons, Autism Speaks’ campaign of “Light It Up Blue” by shining blue lights on April 2nd, and new autism prevalence statistics that should shock and motivate people that this is an epidemic that cannot be ignored any longer. For some families, autism means mortgaging their homes to pay for therapies their children desperately need. For others, autism means tremendous family stress that leads parents to divorce. For us, it’s driving our severely anxious adult son to a hospital thirty minutes away because no local help exists, praying that we get him there before he has another meltdown and praying that they can help us find the sweet young man we know exists behind the aggression caused by brain chemistry that needs to be fixed. Welcome to Autism Awareness Month; please fasten your seat belts, as we seem to be experiencing some turbulence.

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.